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Repeated Endometriosis surgeries without pain resolution

Posted by hef @hef, Jan 1, 2022

34 YO Single Female, no children. Crohn's disease and right ovarian abscess since 15 years of age. Surgeries for 1) infection control and drainage of abscess on right ovary at Children's Hospital Denver ( 2004) 2)Small Bowel resection Children's Hospital Denver 2005, and I have had three surgeries in the past three years, 3)for adhesions of fallopian tube and right ovary, 4) June 2020 Summit County Hospital Removal of right ovary and fallopian tube and 5) April 2021 Boulder surgery center excision surgery for endometriosis lesions. There were many lesions excised including ones on uterus and Left ovary. Pain has never resolved. Surgeon, and Gynecologist recommend hysterectomy and ovariectomy for remaining ovary. I am hesitant to take this action if it will NOT solve the pain issues. I am incapacitated every time a new cyst forms on remaining ovary. The pain is constant and affecting my mental health as well as my ability to do my job.
Is there any way to get an opinion that incorporates my entire medical history? Is an appointment available soon?

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nestletea | @nestletea | Jan 2, 2022

I have been dealing with endometriosis for years and had a hysterectomy in 2014 (left ovary removed), in which many areas of endometrisois were removed. My right ovary was barely able to be preserved during this surgery, due to being surrounded by cysts. I had a second surgery in 2015, as the endometriosis was growing recto-vaginally and all areas were removed. In December 2020, I had a 3rd surgery, as I had a huge cyst (6.5 cm.) on my right ovary and multiple areas of endometrisois that were cauterized (bladder flap, and left/right pelvis areas.). I began my journey with Mayo Clinic in Jacksonville in March 2021 and was finally referred from women's health (after seeing multiple specialitst) to GYN, where an MRI revealed multiple areas of endometriosis throughout my pelvis and vaginal cuff. I have been using HRT since December 2020 and recently started Pelvic PT, along with vaginal valium supossitories to help with the pelvic pain. I am scheduled next week for Botox injections in the pelvic region to try and get some relief. With that said, these are all bandaids for endometriosis, including hysterectomy and oopherectomy. I will be scheduling endometriosis excision, but since I work as a counselor in the local school district, I am trying to hold off until June (summer break). Mayo Women's Health (Dr. Thielen) has been the most thorough and knowledgeable doctor I have seen throughout this journey. I have been seeing Dr. Destephano (GYN) for the endometriosis plan and scheduled Botox injections. Unfortunately, he did not thoroughly review my records at my second visit, and had to go back and change the plan of action to excision surgery. With that said, I have a video consult with Dr. Wasson in Arizona this week, as she is highly recommended for excision surgery and has excellent outcomes. There is a ton of information on endometriosis on Nancy's Nook (https://nancysnookendo.com/) and a Facebook page, that includes highly recommended doctor's (Dr. Wasson) is on this list. As I begin this new journey, I will continue to update on the successes of Mayo and their high level of expertise. Make sure you find a specialist through Mayo that is highly specialized in endometriosis excision and continuously research to make the best possible decision based on your circumstances.
Shared files

Surgeons_International Excision Surgeon Listing 11-17-2020 (Surgeons_International-Excision-Surgeon-Listing-11-17-2020.pdf)

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hef | @hef | Jan 2, 2022
In reply to @nestletea "I have been dealing with endometriosis for years and had a hysterectomy in 2014 (left ovary..." + (show)
@nestletea

I have been dealing with endometriosis for years and had a hysterectomy in 2014 (left ovary removed), in which many areas of endometrisois were removed. My right ovary was barely able to be preserved during this surgery, due to being surrounded by cysts. I had a second surgery in 2015, as the endometriosis was growing recto-vaginally and all areas were removed. In December 2020, I had a 3rd surgery, as I had a huge cyst (6.5 cm.) on my right ovary and multiple areas of endometrisois that were cauterized (bladder flap, and left/right pelvis areas.). I began my journey with Mayo Clinic in Jacksonville in March 2021 and was finally referred from women's health (after seeing multiple specialitst) to GYN, where an MRI revealed multiple areas of endometriosis throughout my pelvis and vaginal cuff. I have been using HRT since December 2020 and recently started Pelvic PT, along with vaginal valium supossitories to help with the pelvic pain. I am scheduled next week for Botox injections in the pelvic region to try and get some relief. With that said, these are all bandaids for endometriosis, including hysterectomy and oopherectomy. I will be scheduling endometriosis excision, but since I work as a counselor in the local school district, I am trying to hold off until June (summer break). Mayo Women's Health (Dr. Thielen) has been the most thorough and knowledgeable doctor I have seen throughout this journey. I have been seeing Dr. Destephano (GYN) for the endometriosis plan and scheduled Botox injections. Unfortunately, he did not thoroughly review my records at my second visit, and had to go back and change the plan of action to excision surgery. With that said, I have a video consult with Dr. Wasson in Arizona this week, as she is highly recommended for excision surgery and has excellent outcomes. There is a ton of information on endometriosis on Nancy's Nook (https://nancysnookendo.com/) and a Facebook page, that includes highly recommended doctor's (Dr. Wasson) is on this list. As I begin this new journey, I will continue to update on the successes of Mayo and their high level of expertise. Make sure you find a specialist through Mayo that is highly specialized in endometriosis excision and continuously research to make the best possible decision based on your circumstances.

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thanks for resources. Will check into them. have scheduled a cal to get an appointment wth Mayo doctors.

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